If proxies understand, interventions less likely
New study examines dementia
A study just published in The New England Journal of Medicine (NEJM) found that patients with advanced dementia frequently have pneumonia, febrile episodes, and eating problems.1 The study also found that these complications are linked to high six-month mortality rates.
Such patients also commonly have distressing symptoms and burdensome interventions. Patients are likely to receive less aggressive care near the end of life if they have health care proxies who understand the prognosis and clinical course, the study found.
Dementia is underrecognized as a terminal illness, even though it is a leading cause of death in the United States, the authors said. There have not been good descriptions of the clinical treatment for nursing home residents, they add.
The researchers studied 323 nursing home residents with advanced dementia in 22 nursing homes, as well as their proxies. They were studied for 18 months. Data were collected on the survival of the residents, their clinical complications, their symptoms, and their treatments. Also, data were collected from the proxies to examine their understanding of the residents' prognosis and the clinical complications that were expected.
Over the 18-month study period, 54.8% of the residents died. During the last three months of their lives, 40.7% of the residents had at least one "burdensome" intervention, such as parenteral therapy, tube feeding, hospitalization, or a visit to the emergency department.
When the proxies understood the poor prognosis and clinical complications associated with advanced dementia, their residents were much less likely to have burdensome interventions in the last three months than those residents whose proxies did not have the same understanding, the authors concluded.
Editorial writer promotes hospice
In an accompanying editorial, Greg Sachs, MD, of Indiana University School of Medicine in Indianapolis, shares his experience with a grandmother who had Alzheimer's disease.2
During the last months of her life, his grandmother had repeated infections and was treated with antibiotics. Additionally, restraints and medications were used to control her agitation. Sachs later learned that her experiences during her final months were typical of patients dying from dementia. He said that 30 years later, end-of-life care for many dementia patients hasn't changed much.
"Patients in nursing homes who have dementia are at risk for undertreatment of pain and for treatment with burdensome and possibly nonbeneficial interventions, including tube feeding," Sachs said. Also, he said they are referred to hospice care at rates significantly lower than those for patients who are dying from cancer.
Hospice care, as well as palliative care, could significantly improve care of advanced dementia patients, Sachs said. Additionally, it might reduce the cost of care, he said. Sachs pointed to studies that have shown hospice care aids in shortened hospitalization, fewer hospitalizations, and milder psychiatric symptoms. Also, research indicates that families of dementia patients who are in hospice have greater satisfaction with the patients' care, he said.
Sachs pointed out that in the NEJM study, more than half of the patients had eating problems and febrile episodes. Pneumonia also was very common. He also pointed out the higher death rate among such patients. "Given this prognosis, it would clearly be possible to anticipate the death of patients in similar circumstances and to discuss goals of care and the option of hospice referral with their proxies," Sachs said.
He also said palliative care would be warranted. Sachs pointed out that patients with advanced dementia can qualify for hospice care without having another serious illness. He said that the care planning meetings held in nursing homes already provide a venue for providers and families to raise issues such as the ones raised in the study.
"Such discussions could modify proxies' perceptions about prognosis and expected complications, alter decisions about the use of burdensome interventions, and increase referrals to palliative care programs and hospice," Sachs said.
References
1. Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Eng J Med 2009; 361:1,529-1,538.
2. Sachs GA. Dying from dementia. N Eng J Med 2009; 361:1,595-1,596.
A study just published in The New England Journal of Medicine (NEJM) found that patients with advanced dementia frequently have pneumonia, febrile episodes, and eating problems.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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